• Carly Wolf

How to Self- Advocate as a Person with Chronic Illness!

Hi Everyone! I hope that your day is going great!  As you can see from the title of this blog post, the topic that I am going to be talking about is how to become a self-advocate when going through chronic illnesses. This topic is so vital because self-advocating becomes so important when you have a disease. The most important thing to remember is that YOU know your body better than anyone else!


There are many ways that you can become more comfortable advocating for yourself, starting with what I said in the last paragraph! You need to remember that you know your body best! Another important tactic that I use is to take notes of how your symptoms are so you can remember to tell your doctor about it. I find that when you come prepared for your appointment, it generally goes better even if the doctor is not so helpful. Another thing that helps is brainstorming questions that you want to ask your doctor before your appointment! This way, it is easier to remember what you want to talk to your doctor regarding! Trust me, and this has happened on multiple occasions. Taking notes for appointments is one of the most helpful things that I do to be the best advocate for yourself! Another tip that goes along with the previous idea is to bring new research to your doctor and ask what they think about it! This can be crucial for self-advocating because it shows the doctor that you know what you are talking about and that you are well educated on your disease! Some doctors may not take this very well but remember that the patient-doctor relationship means that you both need to be putting in work. Having a rare condition sometimes means that you could have a better grasp of your disease than the doctors do!


Another way that you can advocate for yourself is by knowing your rights! This not only applies to have a chronic illness but just, in general, it is a good idea to know your rights. There are a few ways that this could apply to chronic disease. The first one is getting accommodations; this could be at school, work, or even out in a public place! There are multiple different ways that you could advocate for yourself in different situations; examples of this could be asking your school for a 504 or IEP. This could also be asking for job accommodations! Self-advocating can be a hard skill to pick up on, but when you ask for the things that you need, it can make your life easier! These are all within your rights, and I will be making a separate blog post about accommodations at school and work!


The last tip that I have for self-advocating is to learn everything you possibly can about your disease or disorder. This helps so much, in the beginning, I researched a lot and also joined pretty much every support group that I could find on Facebook! This helps because, in the beginning, you run into a lot of doctors that have no clue what is wrong with you. It can help to be able to say, “I researched ____ disease, do you think it would be possible that I have this?” However, you have to be careful when saying things like this because the doctor could think you are trying to self-diagnose. However, I still think this could be good in some situations!


I hope this post can help both those who are undiagnosed or diagnosed learn how to advocate for themselves better! Either way, I hope you found this helpful! Keep your eye out for the next part of advocacy when you have a chronic illness! Leave a comment down below if you have any requests for posts!

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